Survival Of The Fittest-Goers

Top tips for facing your fears and having a blast at music festivals despite your IBD By Jo Power

For someone with IBD, music festivals are a minefield of anxiety and potential digestive disasters. You’ve probably gotten used to looking at the line-ups longingly, wishing that you could go but feeling like it’s impossible. Guess what, you digestively-challenged, die-hard music fans – it’s possible! We’ve put together a list of top tips for going to musical festivals with IBD, so read on and starting saving up for your ticket.

1. Find a Bathroom Buddy

This is by far the most important! You need to go to the festival with at least one very close friend. Before you buy the tickets, ask them if they’ll be your bathroom buddy. You’ll probably ask someone that knows all about your IBD already, but they may ask, ‘What’s a bathroom buddy?’ Explain to them that it would make your experience way less stressful if you guys stick together and if you need to bolt to the bathroom, they come with you. Losing your friends is one of the worst things that can happen to you at a festival because finding them again can take hours. But if you and your bathroom buddy always duck out together, that’s one fear eliminated!

2. Supply Yourself

Come prepared! Bring along a travel size pack of tissues (bring a bunch of packs if you’re going to a three-day festival with camping), wet wipes and just in case, extra underwear. Carry them with you all the time in case the portable toilets run out. If you’re really worried, ladies can wear an overnight pad and guys can double up on underwear. Just knowing you’re prepared can prevent an anxiety-triggered emergency. Be sure to pack a few loose grocery bags so you can inconspicuously transport anything messy to the bin. If you’re camping, sleep by yourself in a one-man tent so you feel free to get up and go to the bathroom whenever you need to. Also for camping festivals, bring along a little bottle of potent air freshener. Just in case you have crazy gas in your tent and then a friend pops by to visit – it could save you a second of embarrassment!

3. Eat Right

If you have any food triggers, don’t assume there will be food at the festival that’s safe for you to eat. Make a shopping list before the trip and bring an abundance of safe, healthy snacks and meals. This is especially important for three-day camping festivals, but it’s relevant to one-day events, too. Some tasty, non-perishable foods are nuts, cans of tuna or salmon, carrots, beef jerky (a lot of these have sugar and preservatives, so be careful if you’re sensitive to those), bananas and peanut butter. Bring A LOT of everything because you’re going to be very active and you can go through little snacks very quickly.

4. Drink Respons-IBD-ly Unless you’re newly diagnosed, you probably know exactly where you stand with alcohol. If you’re going to a multiple-day festival, you can usually bring your own booze, so it’s easy to avoid triggers. But the one-day festivals present a problem because there’s not a lot of variety. Find out before you go what will be on sale and figure out what you can have. You’ll see everyone drinking their frosty-looking alco-pops and refreshing beers, but keep your eyes on the safe option.

5. Be Tough and Ruthless

It’s common knowledge that festival crowds are mixed. Unfortunately, there are always a few jerks among that mix. If you take a long time in the toilet, they’re the ones that shout ‘hurry up!’ or even bang on the door. It’s horrible, rude, inexcusable behaviour and it’s potentially traumatising for someone that’s having major Crohn’s or Colitis problems inside the stall. There’s nothing you can do to stop the jerks, but try to find a way to brush it off. If they bang, concentrate on deep breathing or bring your iPod along and pop some music on. If they say something rude to you when you finally leave the toilet, tell them you were cleaning it for them (boom!). Or just ignore it completely – you’ll never see that person again and even if you did, you wouldn’t recognise each other. If you need to go urgently and the line is really long, you can always ask people at the front of the line to let you go. It’s embarrassing, but if you tell them you’re feeling really sick, most people will let you go ahead of them.

6. Bonus Tip

This won’t work at all festivals, but it’s worth a try because it’s happened before. Get in touch with the festival organisers via email and explain your situation. Tell them that festivals can be terrifying for someone with IBD, but you’re desperate to go and have a great time. Then ask them if you could use the handicapped toilet in an emergency. They may ignore your email, they may write back. If they write back with an affirmative, print out the email and keep it in your pocket. If there is an emergency and the bathroom lines are long, show the email to the guy guarding the handicapped toilet and do your business!

My Thoughts On…

A few weeks ago, I was fortunate to attend the 2015 ECCO conference held in Barcelona.  This is a scientific meeting that brings together the best minds in IBD to share and learn from advances in surgical and medical care, improving economic costs and quality of care,  and understanding of the role environment plays in IBD.

Many thanks to our sponsors Abbvie and Ferring who helped fund my participation at the conference.  Without their help, we would not have been able to join our international colleagues in developing a joint awareness campaign nor would I have been able to update you all on the wonderful and exciting innovations taking place in the world of IBD.

From a layperson’s perspective, it was interesting to see new research areas being discussed. There were very interesting presentations on microbiota, biosimilars and treating to target – all new areas.  There was also a good amount of time devoted to quality of care programs to make the patient pathway in the health system more efficient and effective ( keeping people well and out of hospital) and quality of life funding for programs that take care of general wellbeing.

It was good to see that a number of areas – outside of traditional medical and surgical therapy are now being considered as therapy options to support remission.  We learnt that gut flora can be changed by eating specific fresh foods such as cruciferous vegetables as a regular part of a healthy diet which in turn has the potential to induce remission in some IBD cases.

There were presentations on the new drug therapy Vedolizumab, which treats only the affected area of the bowel avoiding the potential issues associated with a suppressed immune system caused by older biologic therapies.

Biosimilars, which are a copy of existing biologic therapies produced by different manufacturers, were a topic of much discussion. Not enough is yet known about biosimilars in the field of IBD although they are currently being used in some parts of the world to treat rheumatoid arthritis as a more cost-effective option.  In the coming years,  as patents expire on the current biologic therapies used to treat IBD, biosimilars and their efficacy and safety for IBD patients will be an important area of patient education to enable informed choices before switching medication.

The conference not only presented an opportunity for patient representatives to upgrade their IBD knowledge but to also come together and share ideas and developments from their own countries.  It was a similar conference six years ago that gave life to World IBD Day and created a shared understanding of patient experiences and needs.  This year, my American, European and UK colleagues met to discuss a new co-created awareness program for World IBD Day, May 19, 2015.  The global awareness program harnesses social media channels and invites individuals to participate in a very specific and powerful way.  More details and an invitation to participate will be released in mid-April in preparation for a worldwide launch on May 19.

Until next time

Francesca

CEO of Crohn’s & Colitis Australia